Tag Archives: gender

The Aspie Quiz was recently updated to Final Version 3, which is a major update, so I thought it would be a good idea to retake it. Much of what’s changed is behind the scenes refinement of the test items and won’t be evident to the average test taker. If you’re new to the Aspie Quiz, you might want to read my original write up for more background. This post will focus primarily on what’s new.

If you’ve taken the Aspie Quiz before, you’ll likely notice that there are some new questions and that the wording of the test result has changed. Previously, test takers received Neurotypical and Aspie scores; currently the scores are presented as Neurotypical and Neurodiverse, with an outcome of “likely neurotypical”, “likely neurodiverse” or a mix of the two.

In the context of the test, the term neurodiverse includes autism, ADHD, dyslexia, dyscalculia, and dyspraxia (and perhaps OCD and Tourettes). However, the test still appears to be primarily a test for autistic traits. This is reflected in the statement that:

The goal of this test is to check for neurodiverse / neurotypical traits in adults. The neurodiversity classification can be used to give a reliable indication of autism spectrum traits prior to eventual diagnosis.

If you want to read more in detail about the development of the Aspie Quiz and what has changed over time, Leif Ekblad has published a paper detailing his research and a detailed history of the quiz. Of particular interest is the comparison of the AQ and Aspie Quiz scores, particularly for women. As many of us who’ve taken both have noticed, the AQ has a strong gender bias and the Aspie Quiz is more gender neutral. Anecdotally, the Aspie Quiz has always appeared to be a better predictor of whether someone is on the spectrum and that is addressed in the paper as well.

There are some aspects of the paper that I found problematic, but I’ll leave that to others to critique and focus here on the test itself. Before I do that, however, there is one sentence in the paper that jumped out at me that I want to share:

The idea that neurodiversity/autistic traits lie on the extreme end of a normal distribution is not supported by Aspie Quiz, rather the neurodiversity traits seem to have its own normal distribution overlapping the normal distribution of typical traits.

For those who have wondered why they receive two scores on this test, I think the above quote sums it up nicely. It’s also a good response to the oft-repeated fallacy that “everyone is on the spectrum” or “everyone is a little autistic.”

Taking the Test

To take the Aspie Quiz, start here. You have the choice to login/register or to proceed directly to the test. If you choose the former, you’ll be contributing to the test developer’s research regarding the stability of test scores over time (assuming you take the test more than once).

Once you’ve proceeded to the start of the test, you’ll first be asked some demographic questions. The information you share is used in the development of the test and has no impact on your scoring.

The test itself is 128 questions, answered on a Likert scale. The choices are: don’t know, no/never, a little, yes/often. The test will take about 20 minutes, so be sure you have enough time to finish it before starting.

Scoring the Test

At the end of the test, you’ll get neurodiverse and neurotypical scores, along with a “likely” prediction. Here are mine:

Your neurodiverse (Aspie) score: 156 of 200

Your neurotypical (non-autistic) score: 54 of 200

You are very likely neurodiverse (Aspie)

You’ll also get a nice spider web graphic and the option to download a PDF with more details, which I highly recommend doing. The PDF contains detailed information about which questions count toward which aspect of your score and includes some background information that may be helpful in interpreting your scores in each category.

On the previous version of the test, I scored:

Your Aspie score: 170 of 200

Your neurotypical (non-autistic) score: 32 of 200

You are very likely an Aspie

Since the last time I took the quiz, there are quite a few new questions and in particular a batch of new questions about sexuality and relationships. Given that I scored so high in Neurotypical attachment (i.e. sexuality) and relatively low in the social and contact on the neurodiverse side, I suspect the relationship and sexuality questions are the biggest factors in shifting my scores toward neurotypical.

Some of the questions in those areas were hard to answer accurately because they’re worded as if the test taker is seeking a romantic relationship or interested in dating, an assumption that doesn’t apply to either those in a monogamous relationship or those who are aromantic or asexual.

Although the quiz avoids gender bias, a few of the questions are biased in the direction of heterosexuality or presumption of asexuality as a non-neurotypical “preference”. More careful wording of some of the new relationship/sexuality questions to encompass both LGBTQ test takers and those in monogamous relationships would help mitigate some of this problem.

But I also think that the role of romantic and sexual preferences in the test outcome would benefit from a different approach. It’s stereotypical and ableist to assume that neurotypical people are sexual and neurodiverse people are not. The neurodiverse people that I know are distributed over a wide spectrum of sexuality and sexual preferences, from asexual to hypersexual and everything in between, just like the neurotypical people that I know.

Looking at the Attachment category questions in the PDF, all of the Neurotypical Attachment traits are related to sex. The Neurodiverse Attachment traits, on the other hand, are questionable in their relevance to attachment versus things like language pragmatics and learning social skills through rules. Surely neurotypical people are interested in aspects of attachment other than sex. More importantly, it’s disappointing to see a test of neurodiversity ascribing typical autistic social traits to “attachment disorder.”

Overall the new questions are much like those of the earlier version that I took: a mix of the highly relatable with the expected, plus a few that I have trouble tying back to any known autistic traits.

I was amused by “Do you have a need to confess?” because I’m so bad at lying or concealing things from people and inevitably feel the need to spill my guts at the drop of a hat. There were a few perplexing ones, including the one about walking behind people and the one about examining people’s hair. (And I still don’t get the slowly flowing water question – though I suspect it identifies people who are visual stimmers in general.) I wasn’t sure how to interpret the “afraid in safe situations” question. Maybe it’s meant to reveal phobias or irrational anxiety?

Finally, the “criticism, correction, direction” question is repeated twice with slightly different wording (possibly as a check question).

The Bottom Line

Of all the online tests I’ve evaluated, the Aspie Quiz has always felt like the most accurate in overall scoring and the most comprehensive in variety of questions and that’s still the case. I’ll be curious to see how re-takers feel about their scores and what direction, if any, scores have shifted in.

While many of the intersections of autistic and female in my life have been social, there are undeniable physical intersections too.

The arrival of adolescence brought with it hints of what it would mean to be an autistic adult. My first real meltdowns. My first experience with depression. My first confusing encounters with physical intimacy.

With nothing to compare those experiences to, I assumed they were a normal part of being a teenager. Everyone said that being a teenager was hard. I couldn’t dispute that. It didn’t seem necessary to look beyond the explanation of “this is hard for everyone.”

That would become a theme. Pregnancy. Breastfeeding. Postpartum depression. My body’s reaction to birth control pills. Countless books and magazine articles assured me that these things were no walk in the park. Not knowing that I was autistic, I had no idea that I might be having a rougher time of it than the average woman.

It wasn’t until I hit menopause–and the hormonal fireworks that come with it–that I finally realized something was different. Not just with how I was responding to the hormonal changes of perimenopause, but with how I was coping with life in general.

At first, I had no idea that perimenopause had begun. It creeps up slowly and because I was barely out of my thirties, the word menopause wasn’t part of my vocabulary. What I noticed, instead, was that I was having a lot of difficulty coping with the daily demands of life. It was harder to concentrate on work. I wasn’t sleeping well and felt tired all of the time. I was moody and quick to cry over the silliest things. But the most surprising development was a new resistance to socializing. Being around people I don’t know well had always been uncomfortable, but suddenly it felt exhausting.

Ultimately, thanks to the hormonal changes of perimenopause, my autistic traits became too obvious to ignore. This led, in a roundabout way, to my realization that I’m on the spectrum. And that feels like a fitting sequence of events, because the cognitive challenges of menopause are turning out to be much greater than the physical symptoms. Yes, the irregular periods and night sweats and sleep disturbances are hard. But it’s what’s happening in my brain–the way “the change” is changing my cognitive function–that’s taken center stage for me.

Forgetfulness, concentration problems, anxiety, fatigue and mood swings are often listed among the “other symptoms” of perimenopause. Thanks to my autistic brain, I already experience those things to a greater degree than the average woman. Menopause has ramped up the intensity, but I’ve had years to develop coping strategies.

The “symptom” I’ve been struggling the most with is one that you won’t find on any typical list of symptoms. Three years into perimenopause, my language processing has developed some glitches. When I write, I leave out words and make odd substitutions. Speaking is an adventure in trying to remember which noun I’m looking for.

At first, I thought maybe my brain was broken in some new and scary way. When I blogged about my worsening language glitches, I was stunned to hear from dozens of autistic women in their forties and fifties who had similar experiences. Other discussions on menopause revealed more common ground. I wasn’t the only who was suddenly tired of the effort it takes to pass for “normal.” I wasn’t the only one having more meltdowns or struggling to cope with day-to-day responsibilities. There were a lot of “me too” replies, too many for them to be a coincidence.

The autistic female body is fundamentally different, it seems. We start out with an atypical baseline. Add in hormonal fluctuations and we get Menopause: The Deluxe Bonus Edition. Thankfully, I finally have what I lacked during those other hard stages of my life: community. I have other women–women like me–whose experiences I can look to for comfort and wisdom.

*

Throughout my life, being autistic has shaped my experience of being female. But how has being a woman shaped my experience of being autistic?

Because I’m new to being autistic–that is, to knowing I’m autistic–this is a harder question to answer. My autistic traits are an indelible part of me and always have been. Whether I was aware of them as autistic or not, they influenced me at every stage of my life. Now that I recognize their autistic nature, I can look back and see how they have made me who I am.

Perhaps the greatest impact of gender has been that it helped to cloak my autism. I grew up in a time before Asperger’s existed. Children of my generation were much less likely to be diagnosed with autism if they could speak and were in a mainstream classroom.

My teachers realized early on that I was different from the other kids. They labeled me gifted and designed a special curriculum to keep me busy. They enrolled me in the town’s gifted classes. They tasked me with helping out the reading specialist and the librarian. They even tried to skip me over a grade, a move that my parents wisely blocked, reasoning that my already painfully shy nature would put me at too big a disadvantage with kids two years older than me.

Even as an adult, autism was a hard explanation to consider. I skirted it for years, buying into the Rain Man stereotype, not seeing myself in the descriptions of boys who loved airplane engines and men who had no social lives. It wasn’t until I discovered Tony Attwood’s writing that I realized there is more than one way to be autistic.

Girls can be autistic too. In fact, there was a detail in Dr. Attwood’s book that made me gasp out loud. In explaining how autistic girls often have interests that appear to be the same as typical girls, he described how one of his patients liked to play with Barbies, but instead of making up pretend scenarios for them, she enjoyed lining up the dolls and their clothes.

I felt like I’d been struck by lightning. I had a huge collection of mostly hand-me-down Barbies and their clothing and what I most loved doing was laying all of the items out on my bedroom floor and sorting them by type. I had far less interest in dressing the Barbies or sending them on dates than in ensuring that each of them had exactly the same number of dresses and pants and shirts and shoes. I could spend hours sorting and distributing their clothes. Once that was done, I’d play with them for five minutes and pack everything away until next time.

If an adult walked by and glanced in my room, they would have seen a little girl playing with her dolls. Only if they’d watched carefully would they have noticed that I did the exact same thing every time. Classic autistic behavior camouflaged in a girly disguise. If I’d been a boy with a love of sorting batteries or radio parts, my autistic traits may have been more noticeable.

As girls, we learn to hide in plain sight. We hover at the fringes of social groups, giving the impression that we have friends. We sit quietly through years of school, creating the illusion of shyness. We let older girls take us under their wings, mothering and mentoring us in the social skills that they sense we’re lacking. We learn that there are rules and we set out to master them as best we can. We learn that we have roles to play and we struggle to fill them, often at the cost of our self-esteem.

*

Coming to understand that autistic girls and women have somewhat different traits than autistic boys and men made it clear, finally, that there was a place on the spectrum for me. Not only that, there were other women like me, other women who shared similar traits and experiences.

I’d spent decades feeling like I was an anomaly and suddenly here was an entire community of people who understood.

As I’ve read the experiences of other autistic women, I’ve come to realize why autism is described as a spectrum condition. As autistic people, we share much in common but we are also different in many ways. No one is autistic in exactly the same way that I am. This has given me permission to be me–to see myself on the broad spectrums of womanhood and humanity–and to embrace myself as I am.

I’d like to say this is a done deal–I’ve accepted myself and now I can move on, brandishing my shiny new self-image. Perhaps that will be the case one day, but for now, I am a work in progress. Each time I think “yes, this is it, I’ve got it now” I soon find myself unpeeling a new layer, discovering some aspect of myself that I’d tucked safely away.

In the past year I have rediscovered the joy of stimming. I have unearthed a playfulness within me that I thought was lost. I have begun to learn how to share my feelings and speak up for myself and identify my wants and needs. I’ve opened up doors inside me that I was once frightened of even approaching.

There is a joy and a terror in this kind of self-discovery that is akin to the best roller coaster ride ever. Again and again I find myself nervously climbing that first hill, anxiously anticipating the first drop and then, finally, with a shout of joy, giving myself over to the thrill of the ride.

Note: This is my contribution to the Ultraviolet Voices anthology. It’s nearly 5000 words long, so I’m going to serialize it here over the next 3 weeks.

At five, I wanted to be a boy. I don’t know what I thought being a boy meant. Maybe I thought it meant playing outside in the summer, shirtless and barefoot. Maybe I thought it meant not wearing dresses.

Too young to understand sensory sensitivities, I followed my instincts. While other girls favored frilly clothes, I gravitated toward the soft comfort of cotton shirts and worn corduroys.

Somehow, comfort got mixed up with gender in my head. For decades, “dressing like a girl” meant being uncomfortable. And so began a lifelong tension between being female and being autistic.

*

For a lengthy stretch of adulthood, I had an entire section of my closet that could best be described as aspirational. Pants suits. Dressy blouses. Pumps and sandals. Skirts, bought and worn once for a special occasion. Dresses, bought and worn never, before being spirited off to the thrift store.

I preferred ripped jeans and running shoes, hoodies and baggy t-shirts. Comfortable and comforting, just as they had been in childhood.

I’ve been planning to write about gender and autism for a while now. Months ago, I wrote a personal reflection piece. It got two emphatic thumbs down in beta, so I let it languish in my drafts folder. Then, after some feedback from commenters here, I decided I would write a more informative companion post as context for the personal reflections, but that never happened. Then I cannibalized the personal reflections piece for something I was invited to submit to an anthology, which took me weeks to write because apparently everything takes me weeks to write lately.

Which left me still wanting to write about gender and autism here. As a first attempt, I’ve surveyed some of the ideas that people have put forth about gender and autism over the years, starting with Asperger himself.

Note: I’ve linked to a bunch of articles in this post, many of which I don’t agree with. However,I want to share the background information that I used so you can make your own decisions. Also, most references here are to binary gender and gender norms because that is the way most of the research is framed.

The Original Gender Link

In his paper describing his case studies, Hans Asperger hypothesized that autism must be a sex-limited or sex-linked condition because he had only observed it in boys. However, he also noted that some mothers of boys at his clinic who had autistic traits, which he found puzzling given the lack of girls who fit his model. His explanation for why there might be autistic women but not autistic girls was to suggest that autistic traits develop in females only after puberty.

He went on to state that he’d studied over 200 additional autistic children and had concluded from his observations that the autistic personality is an extreme variant of male intelligence. It’s important to note here that Asperger’s model was developed based on case studies of 4 boys who had been referred to him for behavior problems in school. All of them were considered to be uneducable in the traditional school system, creating a very specific profile on which Asperger based his observations.

It’s interesting to contrast Asperger’s idea of male versus female intelligence with Simon Baron-Cohen’s male and female brain models. Asperger believed that females were better learners with a tendency toward concrete practical thinking and tidy methodical work. He thought that males, on the other hand, were naturally gifted with logical ability, abstraction, precise thinking and formulating, and were predisposed to excel at independent scientific investigation. Continue reading Gender and Autism: A Preliminary Survey Post→

This week’s questions are about acceptance and gender/sexuality/body image. You can answer here or at Survey Monkey, wherever you feel most comfortable. (I’m going to break from pattern and answer anonymously this week, because . . . reasons.)

Acceptance

Do your friends and family ask you about your diagnosis? Do you feel supported by them?

Do you ever feel ashamed to be autistic/technically disabled/different? Especially after spending a big chunk of your life as a ‘normal’ person?

Do you all experience a lot of double standards regarding your autism, and how do you deal with this? For instance, it annoys me so much that an NT person can move their hands around, fiddle with clothing etc, but when I do it, it’s stimming and therefore A Bad Thing in the eyes of others.

If you could be neurotypical, would you want to be?

How often do you hear someone use autistic as a pejorative?

Before you realised you were autistic did you ever understand yourself as being somehow not human or not from your culture of birth? (e.g. an alien from the wrong planet or born into the wrong country, century or species etc)

Gender/Sexuality/Body Image

How do you relate to gender? What is your understanding of the word/concept?

Has there been a point in your life when you felt that you wanted to be, or were meant to be, a gender different to the one you were raised as? (If so, why do you think this was, how old were you, how long did this last?)

Do you currently believe in or follow gender roles and stereotypes? (for example, roles/rules about how you’re meant to dress and present yourself, what interests you’re meant to have, how assertive/emotional/nurturing/etc you’re supposed to be, what role you’re supposed to take in personal and professional relationships, etc)

If you are some variety of transgender or answered that you’re gender nonconformist in some way, do you think that this is in any way related to your autistic traits? Do you think you ‘do gender’ or ‘do transgender’ differently to other people because you’re autistic?

Is your sexuality, romantic orientation or preferred relationship structure different from our cultural norms in some way? If so how does this differ and do you think this is related to your being autistic?

Have you ever had any difficulties with your self image, if so how did these manifest? (such as physical/bodily gender dysphoria, body dysmorphia, eating disorders)

This week for Take-a-Test Tuesday, I took the Autism Spectrum Quotient (AQ) test. The AQ is used as a clinical screening instrument so in addition to taking the test, I read two of the studies that have been done to validate it. The write up that resulted is rather geeky.

The Autism-Spectrum Quotient (AQ) was developed by the Autism Research Centre at the University of Cambridge and first published in 2001. While the test has “Autism Spectrum” in its title, it’s geared toward identifying adults with Asperger’s Syndrome. It has been tested on adults with normal intelligence who had been diagnosed with AS or HFA*. While the AQ isn’t considered a diagnostic instrument, the 2005 study referenced later in this post did recommend that it be used by family doctors/general practitioners to determine whether to refer an adult patient for an in-depth Asperger’s Syndrome evaluation.

The AQ is composed of 50 short questions, 10 each on:

social skills

attention switching

attention to detail

communication

imagination

The 2001 study that was used to develop the AQ has some interesting data about the validity of the individual questions. If you’ve always disagreed with the idea that autistics lack imagination or can’t see the point of “the phone number question” on the AQ, you might find the individual item analysis revealing. Go take a look for yourself (Table IV, especially items 3, 8, and 29).

I’ll spare everyone else the gruesome details.

Pros and Cons of the AQ

Pros:

Short, can be taken quickly

Self-scoring

Includes questions phrased as both preferences and perceived competencies

Taking the Test

There are many places that you can take the test online. I took it at Wired.com. To get started, read the questions and choose one of the four answers for each. Don’t spend too much time agonizing over the slightly or definitely wording. The scoring is based on your choice of agree or disagree with no weight given to how strongly you feel it.

When you’ve answered all of the questions, click the “Calculate Score” button to get your AQ score. You’ll see your score on the next page along with a list of which items you scored positively on. Each positive item (i.e. item that indicates an autistic trait) equals one point, so a higher score indicates the presence of more autistic traits.

Scoring the Test

The possible scoring range is 0-50. The 2001 study found that 80% of people with Asperger’s who took the test scored 32 or higher. A subsequent 2005 study proposed a cutoff score of 26 be used when screening adults for Asperger’s in a clinical setting. The second study found that of 100 people who completed the AQ, the test correctly classified 83% of them as having Asperger’s or not. The 2005 study states that using the higher score of 32 as the cutoff would minimize false positives, so there really isn’t a clear consensus on how useful the midrange scores are.

Here is a graph comparing the scores of people with Asperger’s to the scores of neurotypical controls in the 2001 study:

The graph shows a fairly clear difference in the distribution of scores between those with Asperger’s/HFA and the control group. However, it also shows some overlap in the middle of the scoring range. Some people who were clinically diagnosed with Asperger’s/HFA scored in the teens, well below the cutoff of 32, and some neurotypical people scored in the thirties.

The original study also has some interesting outcomes for gender. In the AS/HFA group, the mean score for women was higher than for men, while in the control group, the reverse was true. In fact, the mean score for women with Asperger’s was 38.1 (vs. 35.1 for males) while not a single woman in the control group scored above 33 (highest score for male controls was 37).

Oh yeah, my score was 41.

The Bottom Line

Unless you score at one extreme or the other, you may find this test raises more questions for you than it answers.

————-

*I used HFA (High Functioning Autism) throughout this post because it was used in the 2001 study to describe the diagnosis of some of the study participants.

What People Are Reading

Yesterday I ventured way way way outside my comfort zone to record an interview on Autism Spectrum Radio. The host, Rob Haupt, asked some great questions and was easy to talk to. You can listen to our conversation here. Rob does a short intro and then the rest of show (about 35 minutes) is our conversation.

My friends Ibby Grace And Amy Sequenzia are editing an anthology titled “Typed Words, Loud Voices”, a collection of works by people who type to talk always or sometimes. They’re looking for essays, poems, stories or whatever form of expression you’d like to share your message in.

As some of you noticed yesterday, I’ve updated the blog theme to add a little color. Maybe down the road I’ll experiment with some of the new features (like this one that allows short “aside” posts). It’ll take some getting used to, I know.

And yes the remodeling is an indication of just how bored I am with all the not writing I’m doing.

Triathlon training is chugging along nicely – 3 weeks to go and I feel great, if a bit worn out. The garden is producing lots of cucumbers and tomatoes, a few eggplants and peppers. And for some reason I’m the only person on earth who can’t grown squash? With the exception of one green squash a couple of weeks ago, all I’m getting are tiny little squash that turn yellow and wither.

Besides a renewed obsession with The Sims, that’s about all that’s new around these parts.